Why is Rare Disease Day important?

  • There are more than 7000 different rare diseases affecting 8 percent of the population. If evenly spread, 1 in 12 households would be affected by a rare disease.
  • A day focused on rare diseases can bring hope and information to people living with rare diseases, their carers and their families.
  • Rare disease patients are often the orphan of the health system, sometimes without a diagnosis, without effective treatment or without research.
  • Diagnosis, treatment and cure of rare diseases are major public health problems for society.
  • Rare diseases are often life-threatening with a high level of complexity. Patients and their families are often isolated and vulnerable. Life expectancy for many rare disease patients is significantly reduced.
  • Rare disease patients often have difficulty accessing appropriate health and disability services - they are too often put in the ‘too hard’ box.
  • Holding a national awareness day is a great way to inform and remind people that rare diseases need attention in research and health services.